Special Olympics 2012, Day One

This year’s Special Olympics has come and gone.

The two day event went a little differently this year. For starters, it was the first year I didn’t get time off from work to watch the competitions. Puppy wasn’t too happy about that and even voiced that he didn’t want to participate, in his words, “I don’t want to go outside today.” I was hoping that after his morning call to my sister on Wednesday, he would get his pep talk and be convinced to get on the bus, go to school and change into his uniform for the events. Luckily, it pretty much happened that way. His teacher wasn’t going to let him sulk or stay in the classroom alone while they all went to the field.

On the first day of the Special Olympics, he did fine at the 50 meter run. In pictures that were taken by another classmate's mom, I see he was grouped with 4 other kids, him being the tallest and biggest. I think those little runners had an advantage over him…just saying. He didn’t place and came in 4^th or 5^th. 

It was it long day in the sun for Puppy though. His after school routine was changed, too. He was dropped off at my parents’ house after school. My sister was there and asked if I would like her to take him with her to my brother and his wife’s house until I got out from work so I wouldn’t have to deviate further from my route home. I got there and he greeted me like he usually does. He was excited to tell me about his day at the Olympics and how he ran as fast as he could to get his ribbon.

I sat down on the sofa to visit with my sister, my nephews and niece. Puppy on the other hand, was ready to go home. When I told him we’d leave in a while he didn’t like it, but waited. My brother got there, then my sister-in-law, and so I was catching up with them as well. By now Puppy was even more bored and asking to leave again. My sister-in-law asked us to stay for supper, but still…Puppy wanted to leave. When I said to him we’d leave after we ate, he took a deep breath and walked to another room and screamed he was going to bit himself if we didn’t leave. I told him soon, let’s eat first. And he took his hand to mouth and bit down as hard as he could. His braces left a terrible mark and open wounds on the backside of his right-hand. He started yelling, “I bit myself hard!” “It hurts!” I went and found him sitting on the bed crying with his hand in the air. Puppy’s first response was he’s sorry. He knew it wasn’t good behavior and figured I’d be angry. I was, but it was done. My instinct is to comfort him. It may not be the right thing because generally it was giving him attention. But as I saw it, my attention did not reward him and we were not leaving. Instead, I did comfort and his wound was cared for with ointment and a band-aid; and we walked to the kitchen to eat.

I read his face and saw embarrassment. But he tried to make small talk with others just the same. By this time Ms. H had arrived to meet with us for the evening. He sought her undivided attention for a while before asking to go outdoors. He was fine for the remainder of the evening. This was the end of day one.

What caused his tantrum? I will never know. I can take guesses. I can speculate. But Puppy has autism and can’t tell me himself why he turned to self-injury. Something triggered it, but looking for attention was not it, because attention does not take him to another location like he wanted. He wanted to go home and probably wanted some of this day to have routine to it and ultimately…none of this day was familiar or routine to him.

Puppy is doing well now and looks down at his hand. “Why did I do this, mom?” I don’t have an answer.

Puppy's Improving

I’ve written about counting days and how my time was consumed by worrying about all those who, what, when, where, why or how, whatever or whenever…as it related to affecting Puppy having a tantrum.  Well, we started the New Year without counting days.  It seems like some of the repetitious teachings have finally clicked with Puppy. But before you start clapping and cheering, his behaviors have improved but they haven’t disappeared.

These two weeks since he’s been back on a routine and the exposure to his classroom setting and teacher  seems to have given him a flashback about how “good behavior” is always expected of him. 

I’ve mentioned that we have told him the smoke detectors are cameras for his teacher, aunt, uncle, etc…,but we also started having his teacher come over to our home once a week for a total of six weeks (two down, four to go) doing in-home training.  This has made a deep impression on Puppy.  The idea of his teacher knowing what is going on in his own home by viewing a camera has now been stepped up a notch, and now he is very aware of her presence because it is now physical, a reality. 

So now, instead of counting days, I am marking each day on our calendar with a point for good behavior or an “X” for unwanted behavior.  Yes, still with the calendar because he is still trying to earn his One hundred (100) points to reinforce the fact that he can and did have 100 days of good behavior.  We changed it up just a little though.  Before the holidays, his teacher sent the calendars home and the power switched over to me.  I am responsible for deciding if he deserves a daily point since the lack of respect and tantrums were at home and not at school. 

In case you forgot, the points system has been there since September, but the teacher was the firm one between us and she has no problem placing “X” and even removing points for unwanted behavior.  This is not so easy for his mom.  I’m a softie when it comes to wanting him happy.  And remember, the points are being used to allow him to get the prized possession back—his wallet!

To summarize, Puppy is showing much improvement and minimized unwanted behaviors.  Is it all working?  I don’t know.  Maybe he’s just playing us for fools, and doing a great job of it, but if it removes the tantrums and meltdowns and foul language—I’ll take it any day.

Eighteen long days

Well, here we find ourselves pushing on with many challenging days in between the holidays still ahead.  Puppy has made it through with our count of 18 days without a tantrum!  He’s been really good about catching himself as he tenses up and he’ll walk away to talk to himself.  This is to basically lecture himself out loud with phrases that have previously been told to him in an attempt to make an attitude adjustment.

The Thanksgiving break went rather smoothly.  He really enjoyed the days with absolutely no routine, those days he didn’t go to daycare and got to spend time at grandma and grandpa’s house.  There he gets to be outdoors the entire time.  He’s a free spirited kind of person.

Although Puppy is not allowed to carry a wallet, he has kept a few credit cards (expired gifts cards) in his pocket.  I even mentioned it to his teacher a couple of days ago, that I’m seeing a pattern that may no longer be isolated to wallets, but rather to the reality that he is able to carry anything in his pockets.  Let me explain.  He recently bought a watch.  He wears it regularly, but he also removes it and places it in his pocket.  The funny part about all this is he is mirroring his uncle.  He looks up to him as a child would his father.  Puppy unknowingly seeks out any male adult that will give him few seconds of their time.  My brother wears his watch and will remove it if he works on cars, his motorcycle, or any outdoor activity that might damage it or simply causes sweat.  I can ask Puppy for his watch and he’ll say it’s in his pocket.  I’ll look at my brother and see the same.  My sweet Puppy is trying so hard to fit in. 

I Changed My Mind

A little over a week ago I posted about Puppy having a meltdown.  Well, on Friday he had another one.  I began to write about that evening, but it only made me flashback to the emotions and horror of that night.  I changed my mind.  So to try and understand as much as I can about the how and why Puppy does what he does, I took to catching up with other bloggers in the autism community. 

Today, I read two separate blogs by two fathers of children with autism.  One is personal in writing about his son, but is also an informative blogger with references to autism studies or what’s in the news.  The other father is also detailed in writing about his family and the daily challenges they face together.   However, both fathers wrote that they were repeatedly being corrected about the way they spoke about their children’s autism.  One child is high-functioning and the other isn’t.  So already their experiences will be different.  One is not more right or more accurate than the other.  I know I would never see one correcting the other on the habits and characteristics of their child with autism. 

This made me wonder about what my readers think.  My blog is so small and probably still considered in the beginning stages that I have not taken to writing about every time that Puppy has a moment, tantrum, melt down, or whatever.   It must be because now I, too, am aware of others out there reading my experiences and being critics about how I handled a situation at home.  Now I think, did I say the right thing? Did I approach Puppy with the best redirection?  I know others will say, it doesn’t matter what anyone might say or think, but it’s difficult not to consider this.  I do know that like the two dads above, I write because I hope to help someone else understand the challenges and everyday living with a child with autism.  It’s a tough job, but the rewards are well worth it.

Well, today’s post was not what I was expecting to write, but I’ll gather my thoughts and write again.

Our meltdown

It started off to be a wonderful Saturday.  Puppy and I woke up alright, meaning we didn't have any grumpy attitude.  I include myself in the "we", because I do wake up grumpy sometimes, too.

This morning we had a schedule to follow:  breakfast, maybe begin chores and head out the door to our support group meeting by 10:00 a.m.  I fixed Puppy his pancakes, I had my meal and coffee, we got ready and off we were.

This is one of two groups in which I participate. It's a small group of about eleven families, more or less, so as time goes by we are becoming closer and closer.  We are able to take our kids because the meetings are held at a local autism therapy center.  It's like an indoor playground for the kids and it works out pretty well to know we are all together.  So back to business, we had a few topics to discuss, fundraisers, an out of town field trip, participating in an event sponsored by another support group, parade float, and a Thanksgiving luncheon. Once those were voted on and penned, we began working on an arts and crafts project to make cornucopia decorations for our luncheon next weekend.  I was finally able to get a little adult time with the other moms as Puppy played and colored with the other kids. But it was obvious that he was getting tired and wanting to leave. He was pacing back and forth, and constantly asking me how much longer so no mistaking the signs for anything else.  Our meeting lasted twice as long, two hours, and too long for Puppy.

We were finally home.  Puppy started a conversation with me, and already I can't remember exactly what was said but I'm pretty positive it must have been about his obsession and him asking when he can get his wallet back.  He wasn't satisfied with the answer I gave him and he sprung up off the sofa.  He started walking in circles, angry and cussing. Knowing this is wrong he came back to me to apologize, over and over. Then asking again, when will he get his wallet back. Still, he didn't like the answer and so this time he hit himself on the head with a closed fist. He stood up and knelt back down next to me.  His face was red with anger, and his hand stretched out to push a potted plant off its table and crashing to the tile floor, soil and broken ceramic where it fell. He seemed frightened by the sound and rather surprised the pot broke, he wasn't expecting that.  Then, there was a smirk of satisfaction showing he got my attention until he saw my expression was unchanged.  He stood up again to pace, curse and think of his next move.  What came next was not what I was expecting.  He was filled with rage and ready to explode but didn't know how to release the pressure.  His arm went up and the clenched teeth let me know I was his target.  I could have moved, but could not have stopped him from needing to punch, it was going to be me or a wall or maybe Ms. H. who was still there with us.  She saw it coming and tried to stop him, but was unsuccessful. After ward, he quickly changed his thoughts and now it was a different anger.  Hitting was wrong, but he still needed to release all the intense emotions within and he began causing more self injury, punching his nose to bleed, his head, his chest. He even picked up a piece of ceramic and looking at me he threatened to cut himself.  Luckily, he is unfamiliar with cutting that he held the rounded side to his skin, then threw the piece when it didn't work. He stared at me, saw my sadness, crying. It wasn't pain from the punch but pain from the heart knowing I could not save him. Nothing I would say was going to erase his anger. He came over to me and placed his arms around me as I directed him to sit on the sofa.  I sat across him on the coffee table, trying my best to calm him.  He cried, I cried. He apologized and so did I.  How can I explain what is happening to him? He can't even explain it to me either. He hurts and it's so deep that it scares us both. I know that the actions are not how he expresses himself but rather the results of not being able to express himself.

Puppy sat across from me and apologized for all that he had done. In his eyes I saw a lost and confused little boy who wanted so badly to be happy, and to make me happy.  He listened and was able to calm down, hugged me and I had my son back. 

I went back and forth with the decision to write this post as detailed as it is, and decided that not enough people understand autism and if I don't tell our story, I'm not being an advocate for my son.  He can't speak about what happens to him because his disability holds him back and prevents him to tell his side of the story. I've even seen him erase episodes of meltdowns, as if it was another person and not him.  I actually pray he doesn't have memory of his meltdowns because they are horrible and painful. Everyone needs a second chance, and Puppy needs that chance, too.

Have you judged or been judged?

As you may already know, Stuart Duncan is one of my favorite bloggers. Yesterday I read his latest posting, “We ask to not be judged and yet…” He wrote there were mixed opinions to a true story about a mother who left her severely autistic son at a local hospital without notice because she could no longer care for him. There are more details to the story, too; but I ask that you take the time read his posting so that you may understand a little of what I will write.

http://www.stuartduncan.name/autism/we-ask-to-not-be-judged-and-yet/

I started writing this post yesterday with two points of view as they apply to Puppy and me. However, since I had a break in between, I lost my train of thought. But let me try and I just hope that I can go back to my original thoughts.

Some people might say I’m one of the lucky ones (in terms of being a parent of an autistic child), because Puppy is high-functioning under the spectrum disorder umbrella with PDD-NOS.

Puppy will be thirteen years old this week and has a comprehension level of a four year old. I have set goals for us, some realistic and some just to keep ME trying harder.

The story about the mother abandoning her son touched a nerve. I would be untruthful if I said that I didn’t feel anger towards the mother in that story for leaving her son. This was my first reaction when I read the story. But as I continued I understood there was much pain that went along with her decision. My reality would be that the anger was meant for someone else. Puppy’s birth parents acted in a similar manner nine years ago.

I do not know what Puppy’s life was like before he came to live with me at the age of almost 4 years. I don’t know if he cried day and night, or had tantrums, or was non-responsive to others, etc. I don’t know the activities that went on in their house nor how Puppy was cared for. As I came to spend time with Puppy, I slowly learned he was non-verbal, not potty-trained, cried without purpose, barely walked and was self-injurious.

I do know that his birth mother was divorced without a job and living with five children ranging from 17 to 3 years old. I do not know the reason she chose to ask his birth father to take him away. She basically gave away Puppy, and since has accepted the consequences. She lost her son.

I do know that his father could not care for him alone because he worked as an OTR truck driver. However, his father was and still is in a very different place. He is in denial that Puppy has autism and repeatedly says, “He’ll catch up soon, he just needs a good teacher.”

I should not judge his birth mother or father. She understands that her choice cannot be undone. He has also chosen to disconnect himself from Puppy. A phone call now and then from another city probably makes him feel he still has a son. Even to me this sounds like I’m judging, but it’s really just the anger talking.

On the other hand, I am definitely being judged by them. I remember when Puppy was five years old and his birth mother called to talk to him. The conversation was brief because of his limitations and short attention span at that time. Within minutes I received a call back from Puppy’s father. He started to question me about Puppy’s daily routines. I didn’t understand why at the time. I was being judged! Neither one understood why “their son” wasn’t speaking yet. I had already enrolled Puppy into public school because his daycare had advised me he was slow, non-verbal and might get some help from speech therapy and actual class time. I acted on it immediately. There was no diagnosis until Puppy was eight years old.

There have been many more events throughout the years that have suggested I am not their best choice for Puppy. I have learned to ignore and save my judgment for deciding what is in the best interest of my son, Puppy.

Yep, it is nine years later. I am still being judged.

What do I think about this? I’m one of the lucky ones, remember? I have Puppy!!